Jae Cobb

@jaecobb | contributor
Super Contributor
I suffer from a wide variety of chronic conditions and every day is a new journey. I do not have much understanding or support from family and I have very few friends left. I find myself battling doctors time and time again to hear my voice all because I am young, minority and female. I am beginning to accept that my life is changing and not always for the worse. Being chronically ill has allowed me to see things differently, grow in my faith and help others who are just starting out. Follow my journey @ChronicallyStrong on Facebook and on tumblr: simplelittlebrowngirljae.tumblr.com.
Jae Cobb
Jae Cobb @jaecobb
contributor

How My Sister's Death Forced Me to Focus on My Lupus

It was a Sunday afternoon. I got a call from my mother saying my sister passed out, please come home. I grabbed water and my purse and began the two-hour drive to the hospital. I arrived at the ER and as I was hugging my mother the physician on call summoned us to “the room.” The room is that place they take you to give bad news. And that’s just what we were getting. We were told by the ER doctor and ICU attending that my sister was very sick and probably wouldn’t make it through the night. She had a massive clot in her lungs which was causing her heart to fail. They could give her meds but they had their own set of side effects. We agreed to treatment and they took her off to ICU. Her heart stopped again. They were able to get her back but she was growing weaker. I left the hospital around midnight and sure enough on my way back early the next morning I got the call. She had passed. I was in total shock. My big sister was gone. I got to the hospital moments later, and her body was still warm. I said my goodbyes to her and realized my life would be forever different, in more ways than I ever realized. We held my sister’s funeral and then began the tedious task of going through her things. We have found so many things, including health records, and we are finding she had so many issues but never followed up. And with her death being sudden, and her not seeing a doctor in over four years, it made me think about my own health, but it also made me angry. I became so angry because if she had just gotten some form of insurance, which was available to her, she could have been seen for so many things. And maybe all this could have been avoided. But then I went back to thinking about my own health. Am I doing all I can do to manage my health? Sure, I take my meds as directed, and go to my appointments, but am I doing enough? Am I doing all I can do to control my lupus? Am I working with my healthcare team in the best capacity? I determined I was not. Driving four hours round trip back and forth between my home and my parent’s home several times a week showed me I was not managing things well. So I scheduled follow-up appointments to have real conversations with my providers about symptoms and emotions and they listened! We reevaluated my meds and came up with a better treatment plan. We also discussed other things that would help me manage my health such as getting better sleep, actually resting, staying hydrated, and listening to my body, meaning if I feel something is wrong make an appointment and come get seen versus letting things get out of hand. It’s a shame that it took my sister’s death for me to realize that our health is precious. But I’m glad I could work with my doctors and make a plan that works for me and that will help me in the situation I’m in. The moral in all of this is don’t wait to get care. Don’t ignore signs and symptoms. Keep your appointments, message your doctors, and most of all, advocate for yourself. Because it all can change in an instant.

Jae Cobb
Jae Cobb @jaecobb
contributor

Dealing With Health Disparities in Marginalized Communities

We see disparities across the board in healthcare, especially as it relates to women and persons of color. And we can trace this back decades as many doctors used women and persons of color in medical experiments in the past or dismissed their claims about illness and pain because they were a person of color or a woman. Yes, you were blown off by medical professionals in the 18th, 19th, and 20th centuries if you were a woman or person of color! And guess what? This still happens to this day. Disparities in healthcare stretch far and wide and are seen every day. Many providers have preconceived notions about patients based on their race and gender before they even see them, and when they do meet a patient they dismiss what they say and don’t want to listen to their complaints. And why, you may ask? Because many providers received a biased education that explicitly mentions thing such as “Black people don’t feel pain,” or “patients may exaggerate symptoms,” or that “women struggle with anxiety and may not actually have certain health conditions,” which is appalling. They are not taught how medical conditions can show up differently in different races or that there are conditions that are more common in women than men or in certain racial groups. Because of that, they dismiss many patients of color and women. And now we have a new wave of disparities among members of the LGBTQIA+ community, which makes accessing care even worse. We also know that bias in healthcare affects access to care. Allow me to explain. If a patient feels that they will not be heard or if their issues will not be addressed, they will not go seek medical care. Why? Because they have a lack of trust in the medical community and don’t feel anyone will help. And the consequences of such is higher mortality rates of diseases that can be easily managed or cured. This is unacceptable and needs to change ASAP. It is essential for patients and family members to be able to speak up for themselves and call practitioners out on their behavior. There is no shame in speaking up for yourself and being persistent in getting the care you deserve. You are worth it. We also have a responsibility to ensure future healthcare providers are trained in diversity and understand what medical bias is and how it affects the delivery of healthcare. And while this may seem like a simple solution, this is very difficult for many to implement. But it needs to happen sooner rather than later. If not, the consequences are dire and affect far too many people.

Jae Cobb
Jae Cobb @jaecobb
contributor

When Doctors Don't Take Your Pelvic Pain Seriously With Endometriosis

I have had endometriosis for about 10 years now. And in that time, I can honestly say I have received less than quality care and much judgment, with a topping of lack of understanding. Because of course there isn’t a huge pool of people who are well trained on women’s health, and that pool gets smaller when it comes to complex women’s health issues. And when we have flare ups, we pray we get doctors who understand and who will treat us fairly. However, that doesn’t always happen. There is a specific moment in my journey with endometriosis that was absolutely awful. I had been having extreme pelvic pain, nausea, vomiting and a slight fever. I went to one emergency room and the doctor on call did a botched pelvic exam and said I needed antibiotics. He totally neglected my health history and blood work, which showed no signs of an infection. Didn’t even do any imaging. The next day my pain intensified to where I was immobilized on the floor in pain. I called a friend to meet me at the ER. I called 911 to come get me. I get to the ER and the they do their intake and initial exam. They give me some pain meds and then this doctor comes in and wants to do a pelvic exam. I tell him that I’m still in excruciating pain and would need to either be sedated or have more pain meds for him to do this. I also try to tell him about my history with endometriosis and adenomyosis and he stops me. He did not care. He continued to neglect my history and accuse me of being a sex worker and being very promiscuous, none of which was true, and he said I probably have chlamydia. This doctor would not listen and wanted to yell at me, while I’m in pain and feeling nauseous, to where the nurse stepped in. At that point he threatened to have us both arrested. If my friend had not stepped in, I don’t think he would have stopped. I had never been so humiliated as 1) a woman and 2) a patient. This showed just how much that women are not taken seriously and mistreated when it comes to our illnesses, especially endometriosis. I have been told all sorts of things: it’s in my head, the pain isn’t that bad (I subsequently passed out after that), there is nothing wrong with you (and had a cyst rupturing) and the list goes on. In this instance I, would not let this doctor touch me. I gathered my belongings and went home and just cried. The next day I went to my doctor’s office and waited to be seen. I found out I was having not only a bad endo flare, but I had developed bad fibroid, which were causing my pain. I also had a small cyst that had ruptured. So, this was not all in my head, I didn’t have an infection and this was not because he claimed I was a sex worker (even though I’m not, there is no shade to anyone who is, but it is not my chosen profession). As for the doctor, I not only filed a complaint with the hospital but with the board of medicine. I got a letter from the hospital a few weeks later saying he was terminated. This made me feel very validated as a woman. I know this was not my fault! And I know if he treated me this way he had to have treated others like this as well. Endometriosis is a hard disease to live with because it’s not easily seen or diagnosed. We have to fight to be heard and understood. So when we have experiences like this, it pushes us back to square one. I pray no woman ever has to go through this in their journey. I pray no woman has to fight as hard as I have to be heard and have their symptoms validated. And I hope this piece raises awareness to practitioners on how they treat us and makes them change their approach.

Jae Cobb
Jae Cobb @jaecobb
contributor

The Challenge of Disordered Eating in the Black Community

Eating disorders can take on many different appearances. And it is important to know it isn’t always being bulimic or anorexic. Sometimes it is having an unhealthy relationship with food, being fearful of eating around others, being scared of certain food choices and people’s judgment on what you eat and how much you eat. It’s also your family continually saying something every time you have a plate in your hand. And how do I know this? Because I have had disordered eating for 30 years. And I recently learned that disordered eating runs in my family…..and that made me have all the more rage. My problems with food began when I was little. I lived in a traditional Black household and we had most every dinner together: great, right? Wrong. In our house, your plate was fixed, you ate what was given and didn’t get up until you finished. The portions were not always the best, and we had that old school mentality of a protein, a starch and a vegetable. “Normal,” right? Well sometimes I didn’t like what was presented or didn’t feel full, and I was always criticized. They were never any healthy conversations around food in my family. The only conversations were that I never ate when I was little, then I got put on steroids and my appetite sky-rocketed, so the conversation changed to I ate too much. And from that point I was 8 years old being put on diets and being told that food is bad and I don’t need to eat this or that. Even if it was a healthy choice I would get yelled at for eating. I have always had this shame of eating. The sad part is none of it worked; I still was overweight and as time went on things never got any easier. And in Black families this is seen as love, and many members don’t see anything wrong with it. But that’s the problem….this is all wrong. Instead of having healthy conversations around eating, good food choices and mental health, we shove everything under the rug and just promote feelings of shame. On the other side of all this, there are those large family gatherings, celebrations and holidays with lots of food and your plate gets piled high and you are told to eat because, well, food equals love and you have to try everything, because if not it’s rude to the person who made it. So with this mentality, how is it possible to have healthy relationships with food when you get conflicting messages about food? Years later I found out that I am not the only family member who struggled with disordered eating. I have a cousin who also has disordered eating but in a different way. She doesn’t have weight issues but was often criticized because she was so tiny and was told she needed to eat more and “put some meat on them bones.” Classic words from Black mothers and aunties and again, they feel they are being loving, but the words cut deep. She, to this day as well, has marked difficulty eating in front of family just like I do for fear of judgment. But time went on and finally as a college freshman I made a breakthrough! I was able to lose weight! I looked great but I traded my eating disorder for an addiction to exercise. I told myself that I could not eat anything unless I burned a certain amount of calories at the gym, and it became a very toxic relationship. I was not healthy because I was barely eating. However, all my family saw was a skinnier version of myself and that is all they cared about….go figure. Eventually I got very sick and had to have surgery, which took me out of the gym for a while, and I slowly started eating normally again. I gained weight and all the feelings came back, as well as the criticism. This lasted for about 10 years until I started losing weight again. But then that addiction to exercise came back and I stopped eating. My weight fell off and I would only eat once a day. I was obsessed with calories. Again, my family didn’t care because all they saw was a skinny Jae. That’s all that mattered. But then my health started to decline. I wasn’t able to go to the gym because I felt so much pain and nausea. And then the medication changes came and the weight piled on. And cue the criticism……every day for the past five years all I have heard is “you are eating too much” or “you really need to exercise more.” When the reality is I barely eat because of my health, and I can’t exercise due to my health issues. But in my family, none of that matters. They just want a perfect picture. And that perfect picture is the problem with many Black families. It is very detrimental to mental health, evokes a trauma response and does not allow for healthy conversations or for anyone to heal and have healthy relationships with anybody or anything. The cultural norms in the African American community around food and appearance are hurting us, and we need to be open and honest about how eating disorders are more common than not. We need to be more open with how it affects our mental health and how it affects our day to day lives. Now, after 30 years of struggling, I finally have been able to discuss my experiences and feelings with my family, but it hasn’t been easy. Every day is a battle to maintain a healthy calorie count, balance meals and be a regular person. And even though I have been working on my healing, that doesn’t mean my family has owned their part and that they are supportive and working to make things easier. That is something that I have had to accept. However, it is my prayer that one day not only will I continue to have a healthy relationship with food in my own home, but a healthy relationship with food and family, and be able to have healthy and healing conversations about how their actions contributed to my disordered eating.

Jae Cobb
Jae Cobb @jaecobb
contributor

What a Lupus Flare Is Like for Me

May is Lupus Awareness Month and recently I experienced perhaps one of the worst flares I have ever had in my life, so much so that it was life-changing. At this point in life, I thought I had gone through all my life-changing moments. I was wrong. I thought I had my lupus under control but over the past few months, I had worn my body down, which caused my lupus to flare completely out of control and have some rare side effects. Several weeks ago, I experienced yet another “life-changing” moment — one I thought I would never experience, but here we are. I was talking to a friend in a normal voice, and then all of a sudden, I couldn’t get my words out. I was stuttering and slurring my words. I thought it was a one-time thing but nope, it wasn’t at all. The next day my symptoms got worse and I couldn’t pronounce certain words, I had numbness and tingling and lots of pain and swelling. I was extremely exhausted as well. I was eventually rushed to the emergency room and was quickly admitted to the hospital. I spent a week in the hospital with them trying to figure out why I had suddenly developed slurring of my words and stuttering, and they couldn’t. They did, however, figure out that my heart was getting weaker and that was causing other issues and complications. I was to follow up with a host of doctors upon my release, as well as start occupational and speech therapy. They also concluded that my lupus played a role in this situation. Days passed and I set up my appointments. Apparently, my loss of speech due to this “neurological event” scared so many people on my medical team that I was on a very short leash. My doctors were stumped and could only theorize about what happened, but it came down to this: months of infections without allowing my body time to recover, plus traveling, plus one of my rare migraines stressed my body and threw me into a lupus flare and affected my speech. The good news was I would recover, but I may have some long-term speech difficulties. Fair enough. I knew this recovery would be hard, but little did I know just how difficult it would be. I soon began speech therapy and occupational therapy, and sweet Jesus, did I learn just how hard this journey would be. I found myself breaking down more times than I cared to because I knew the words or wanted to do the exercises but couldn’t because my hands wouldn’t let me or I couldn’t get the words out. And it hurt me mentally and physically. I found myself reflecting on the hurt I was feeling from the stares from people when they heard my broken speech. Was this my new normal? Whatever the case, I knew I had to feel this pain so that I could keep going. As painful as each step is, I know I need to keep going. But in the process, I have learned a few things: 1. The world is very ableist. Like beyond ableist. I have had to work on getting affairs settled with my job while I am out and the process has not been easy. Using voice prompts when you have a speech disability is not easy. It took me twice as long to get through to the correct departments and get business handled and it was beyond frustrating. And the people weren’t much more forgiving than the phone systems. Having to conduct business and wearing a mask when it is hard to be understood did not make things any easier, either. But somehow I persevered and things got accomplished. 2. I am strong, but I needed to cry. I needed to shed tears to have a physical release to move through this process. I had so many moments where I just cried myself to sleep because this was a lot for me. I need to let out my pain and anger so I could heal in other ways. Losing one piece of myself that I had come to rely on often is hard, and I need to be OK with that. It will take time, but things will be OK. 3. Asking for help has been hard, but it was totally necessary in order for my body to heal the way it needed to. I have lost strength and my body is super fragile right now. I need help… I hated to admit it, but the sooner I did, the easier things got for me. I can’t heal if I am continuously pouring out and not taking time to restore myself. 4. Rest is more than a four-letter word. When my doctor wrote me out of work for a month, initially I felt sadness, anger and frustration. But then I realized just how sick I am and how my body needs extensive time to heal. Imagine a car that ignored its oil changes and other maintenance and the check engine light, and then all of a sudden, it all broke down at once. That is what happened to me. I had been ignoring things for far too long and my body just wore out. 5. Invest in small things to brighten your day. I have ordered things or bought flowers to make my days brighter and better. I have a journey ahead of me, so why not make things pleasant? 6. Grant grace and be patient! I know that this is a whole journey and won’t happen overnight. I need to be patient and accept that I will have good days and bad days, and I may have moments where I am not making as much progress as I want to. And all of that is OK. This is not a sprint, but rather a slow journey. Now that I have been in the thick of this for a while, I have truly realized this doesn’t define me. I am no less of a person and I am who I am. This is just one chapter in my book, and once I make progress, I will have a whole different chapter to write as a follow-up. Some great things can come from this, but I don’t have to push myself through that right now. My focus is healing and returning to my version of normal. For those who are going through something similar, remember you don’t have to be this fabulous super positive kick-ass person. You can take some moments and just be you. Just be a person who takes time to rest and recover and let your body heal. That is just as important.

Jae Cobb
Jae Cobb @jaecobb
contributor

How Ableist Workplace Policies Harm Employees With Chronic Illnesses

People automatically assume that because you are working, you are very healthy and there are no challenges in your life. That is not always the case or situation. Many of us who are chronically ill are still trying to work, in many cases full time, because we don’t have a choice. We need the income and the insurance. However, there are many employers who are not very accommodating to employees who have chronic illnesses. Sure, there are protections in place such as FMLA and ADA accommodations, but those aren’t always easy to enact or you aren’t always eligible for them based on your tenure with the company. And if you don’t have protections in place, there may be an unfair process in place to take time off for appointments, sick days, or even just for operations in general. I have experienced this at a previous place of employment and needless to say, things did not end well at all. When I first took the job, I really hoped that my chronic illnesses would take a vacation, I wouldn’t have any issues, and would be able to accrue leave and do well. But I soon realized that I was not in a positive work environment and that quickly contributed to the flare-up of many of my conditions. I also had to fight many a day to get time off for doctor’s appointments and was questioned without end about why I needed time off for an hour or so for my appointments. And then the unthinkable happened. I had been sick for several days, and nonetheless showed up to work because my employer made it seem like I would have lost my job had I called out. The building I was working in was very old, had known mold and other environmental issues, and despite my complaints about how they affected my health issues, nothing was done. There also was a contractor who worked in the building who had a communicable disease and was around employees and when concerns were voiced from multiple employees, they still did not remove this person, and he continued to work multiple shifts daily, which was a concern to me because of my weak immune system. But because I was new, I couldn’t evoke ADA accommodations or FMLA, so I had to deal with the consequences. Eventually, I got so sick that one night, my heart started racing and I couldn’t stop coughing and I ended up having to call 911 to my home. I was rushed to the hospital and was admitted immediately. I spent a week in the hospital and when I called my employer to tell them I had been admitted the first day they showed concern and the second day they called me to ask “when I was coming back to work?” My mother, who never left my side the entire week, was furious. Here I was, on oxygen and heart monitors, struggling to breathe and survive and all they cared about was when I was coming back to work! I eventually was discharged from the hospital and put on bed rest for another week. When I made it back to work, things were not the same. Any time I wanted off for an appointment, my two weeks off were brought up and I had to write an appeal to the department head for time off. This happened for the next six months. My health continued to decline as well. But my performance never faltered even though I had to take time off for my medical appointments, I would like to point out, even though my employer attempted to make that an issue. Finally, one day, exactly one day before my one-year anniversary, I was terminated. My employer claimed it was because I wasn’t a fit for the job, but I knew it was because of my health issues. Now legally, I knew they couldn’t say that and they knew if they said that they could get sued, but because I live in an “at will” state, they can give any reason to let someone go. For an entire year, I was consistently reminded that I was out from work for two weeks and in the hospital and there was not any understanding. I was always afraid to take time off for fear of termination. My work environment was not made for someone with chronic illnesses. And the sad part is, this is all too common. Many of us have to lie about our conditions, or push through pain and symptoms to keep our jobs, or push off care because of our employers’ policies. Yes, there are federal laws in place to protect us, but employers find loopholes and ways to not abide by them and it makes it hard for those with invisible illnesses and disabilities. I am happy to report that I have an employer now who advocates for me and there are things in place that support me and set me up for success. I still do worry when I take too much time off, but that is my own personal guilt, not guilt from my organization, which makes a world of difference. No employee should have to stress or become filled with anxiety when it comes to calling out sick, or having to ask for alternative work assignments because of their health. It not only dampens morale, but it inhibits productivity. Accommodating employees makes them feel more confident and they want to contribute and be productive and be members of the organization. Employers, look at your policies, be flexible, work with your employees, do what you can to accommodate them. After all, they are what makes your organization go round.

Jae Cobb
Jae Cobb @jaecobb
contributor

How Ableist Workplace Policies Harm Employees With Chronic Illnesses

People automatically assume that because you are working, you are very healthy and there are no challenges in your life. That is not always the case or situation. Many of us who are chronically ill are still trying to work, in many cases full time, because we don’t have a choice. We need the income and the insurance. However, there are many employers who are not very accommodating to employees who have chronic illnesses. Sure, there are protections in place such as FMLA and ADA accommodations, but those aren’t always easy to enact or you aren’t always eligible for them based on your tenure with the company. And if you don’t have protections in place, there may be an unfair process in place to take time off for appointments, sick days, or even just for operations in general. I have experienced this at a previous place of employment and needless to say, things did not end well at all. When I first took the job, I really hoped that my chronic illnesses would take a vacation, I wouldn’t have any issues, and would be able to accrue leave and do well. But I soon realized that I was not in a positive work environment and that quickly contributed to the flare-up of many of my conditions. I also had to fight many a day to get time off for doctor’s appointments and was questioned without end about why I needed time off for an hour or so for my appointments. And then the unthinkable happened. I had been sick for several days, and nonetheless showed up to work because my employer made it seem like I would have lost my job had I called out. The building I was working in was very old, had known mold and other environmental issues, and despite my complaints about how they affected my health issues, nothing was done. There also was a contractor who worked in the building who had a communicable disease and was around employees and when concerns were voiced from multiple employees, they still did not remove this person, and he continued to work multiple shifts daily, which was a concern to me because of my weak immune system. But because I was new, I couldn’t evoke ADA accommodations or FMLA, so I had to deal with the consequences. Eventually, I got so sick that one night, my heart started racing and I couldn’t stop coughing and I ended up having to call 911 to my home. I was rushed to the hospital and was admitted immediately. I spent a week in the hospital and when I called my employer to tell them I had been admitted the first day they showed concern and the second day they called me to ask “when I was coming back to work?” My mother, who never left my side the entire week, was furious. Here I was, on oxygen and heart monitors, struggling to breathe and survive and all they cared about was when I was coming back to work! I eventually was discharged from the hospital and put on bed rest for another week. When I made it back to work, things were not the same. Any time I wanted off for an appointment, my two weeks off were brought up and I had to write an appeal to the department head for time off. This happened for the next six months. My health continued to decline as well. But my performance never faltered even though I had to take time off for my medical appointments, I would like to point out, even though my employer attempted to make that an issue. Finally, one day, exactly one day before my one-year anniversary, I was terminated. My employer claimed it was because I wasn’t a fit for the job, but I knew it was because of my health issues. Now legally, I knew they couldn’t say that and they knew if they said that they could get sued, but because I live in an “at will” state, they can give any reason to let someone go. For an entire year, I was consistently reminded that I was out from work for two weeks and in the hospital and there was not any understanding. I was always afraid to take time off for fear of termination. My work environment was not made for someone with chronic illnesses. And the sad part is, this is all too common. Many of us have to lie about our conditions, or push through pain and symptoms to keep our jobs, or push off care because of our employers’ policies. Yes, there are federal laws in place to protect us, but employers find loopholes and ways to not abide by them and it makes it hard for those with invisible illnesses and disabilities. I am happy to report that I have an employer now who advocates for me and there are things in place that support me and set me up for success. I still do worry when I take too much time off, but that is my own personal guilt, not guilt from my organization, which makes a world of difference. No employee should have to stress or become filled with anxiety when it comes to calling out sick, or having to ask for alternative work assignments because of their health. It not only dampens morale, but it inhibits productivity. Accommodating employees makes them feel more confident and they want to contribute and be productive and be members of the organization. Employers, look at your policies, be flexible, work with your employees, do what you can to accommodate them. After all, they are what makes your organization go round.

Jae Cobb
Jae Cobb @jaecobb
contributor

How Ableist Workplace Policies Harm Employees With Chronic Illnesses

People automatically assume that because you are working, you are very healthy and there are no challenges in your life. That is not always the case or situation. Many of us who are chronically ill are still trying to work, in many cases full time, because we don’t have a choice. We need the income and the insurance. However, there are many employers who are not very accommodating to employees who have chronic illnesses. Sure, there are protections in place such as FMLA and ADA accommodations, but those aren’t always easy to enact or you aren’t always eligible for them based on your tenure with the company. And if you don’t have protections in place, there may be an unfair process in place to take time off for appointments, sick days, or even just for operations in general. I have experienced this at a previous place of employment and needless to say, things did not end well at all. When I first took the job, I really hoped that my chronic illnesses would take a vacation, I wouldn’t have any issues, and would be able to accrue leave and do well. But I soon realized that I was not in a positive work environment and that quickly contributed to the flare-up of many of my conditions. I also had to fight many a day to get time off for doctor’s appointments and was questioned without end about why I needed time off for an hour or so for my appointments. And then the unthinkable happened. I had been sick for several days, and nonetheless showed up to work because my employer made it seem like I would have lost my job had I called out. The building I was working in was very old, had known mold and other environmental issues, and despite my complaints about how they affected my health issues, nothing was done. There also was a contractor who worked in the building who had a communicable disease and was around employees and when concerns were voiced from multiple employees, they still did not remove this person, and he continued to work multiple shifts daily, which was a concern to me because of my weak immune system. But because I was new, I couldn’t evoke ADA accommodations or FMLA, so I had to deal with the consequences. Eventually, I got so sick that one night, my heart started racing and I couldn’t stop coughing and I ended up having to call 911 to my home. I was rushed to the hospital and was admitted immediately. I spent a week in the hospital and when I called my employer to tell them I had been admitted the first day they showed concern and the second day they called me to ask “when I was coming back to work?” My mother, who never left my side the entire week, was furious. Here I was, on oxygen and heart monitors, struggling to breathe and survive and all they cared about was when I was coming back to work! I eventually was discharged from the hospital and put on bed rest for another week. When I made it back to work, things were not the same. Any time I wanted off for an appointment, my two weeks off were brought up and I had to write an appeal to the department head for time off. This happened for the next six months. My health continued to decline as well. But my performance never faltered even though I had to take time off for my medical appointments, I would like to point out, even though my employer attempted to make that an issue. Finally, one day, exactly one day before my one-year anniversary, I was terminated. My employer claimed it was because I wasn’t a fit for the job, but I knew it was because of my health issues. Now legally, I knew they couldn’t say that and they knew if they said that they could get sued, but because I live in an “at will” state, they can give any reason to let someone go. For an entire year, I was consistently reminded that I was out from work for two weeks and in the hospital and there was not any understanding. I was always afraid to take time off for fear of termination. My work environment was not made for someone with chronic illnesses. And the sad part is, this is all too common. Many of us have to lie about our conditions, or push through pain and symptoms to keep our jobs, or push off care because of our employers’ policies. Yes, there are federal laws in place to protect us, but employers find loopholes and ways to not abide by them and it makes it hard for those with invisible illnesses and disabilities. I am happy to report that I have an employer now who advocates for me and there are things in place that support me and set me up for success. I still do worry when I take too much time off, but that is my own personal guilt, not guilt from my organization, which makes a world of difference. No employee should have to stress or become filled with anxiety when it comes to calling out sick, or having to ask for alternative work assignments because of their health. It not only dampens morale, but it inhibits productivity. Accommodating employees makes them feel more confident and they want to contribute and be productive and be members of the organization. Employers, look at your policies, be flexible, work with your employees, do what you can to accommodate them. After all, they are what makes your organization go round.

Jae Cobb
Jae Cobb @jaecobb
contributor

How Ableist Workplace Policies Harm Employees With Chronic Illnesses

People automatically assume that because you are working, you are very healthy and there are no challenges in your life. That is not always the case or situation. Many of us who are chronically ill are still trying to work, in many cases full time, because we don’t have a choice. We need the income and the insurance. However, there are many employers who are not very accommodating to employees who have chronic illnesses. Sure, there are protections in place such as FMLA and ADA accommodations, but those aren’t always easy to enact or you aren’t always eligible for them based on your tenure with the company. And if you don’t have protections in place, there may be an unfair process in place to take time off for appointments, sick days, or even just for operations in general. I have experienced this at a previous place of employment and needless to say, things did not end well at all. When I first took the job, I really hoped that my chronic illnesses would take a vacation, I wouldn’t have any issues, and would be able to accrue leave and do well. But I soon realized that I was not in a positive work environment and that quickly contributed to the flare-up of many of my conditions. I also had to fight many a day to get time off for doctor’s appointments and was questioned without end about why I needed time off for an hour or so for my appointments. And then the unthinkable happened. I had been sick for several days, and nonetheless showed up to work because my employer made it seem like I would have lost my job had I called out. The building I was working in was very old, had known mold and other environmental issues, and despite my complaints about how they affected my health issues, nothing was done. There also was a contractor who worked in the building who had a communicable disease and was around employees and when concerns were voiced from multiple employees, they still did not remove this person, and he continued to work multiple shifts daily, which was a concern to me because of my weak immune system. But because I was new, I couldn’t evoke ADA accommodations or FMLA, so I had to deal with the consequences. Eventually, I got so sick that one night, my heart started racing and I couldn’t stop coughing and I ended up having to call 911 to my home. I was rushed to the hospital and was admitted immediately. I spent a week in the hospital and when I called my employer to tell them I had been admitted the first day they showed concern and the second day they called me to ask “when I was coming back to work?” My mother, who never left my side the entire week, was furious. Here I was, on oxygen and heart monitors, struggling to breathe and survive and all they cared about was when I was coming back to work! I eventually was discharged from the hospital and put on bed rest for another week. When I made it back to work, things were not the same. Any time I wanted off for an appointment, my two weeks off were brought up and I had to write an appeal to the department head for time off. This happened for the next six months. My health continued to decline as well. But my performance never faltered even though I had to take time off for my medical appointments, I would like to point out, even though my employer attempted to make that an issue. Finally, one day, exactly one day before my one-year anniversary, I was terminated. My employer claimed it was because I wasn’t a fit for the job, but I knew it was because of my health issues. Now legally, I knew they couldn’t say that and they knew if they said that they could get sued, but because I live in an “at will” state, they can give any reason to let someone go. For an entire year, I was consistently reminded that I was out from work for two weeks and in the hospital and there was not any understanding. I was always afraid to take time off for fear of termination. My work environment was not made for someone with chronic illnesses. And the sad part is, this is all too common. Many of us have to lie about our conditions, or push through pain and symptoms to keep our jobs, or push off care because of our employers’ policies. Yes, there are federal laws in place to protect us, but employers find loopholes and ways to not abide by them and it makes it hard for those with invisible illnesses and disabilities. I am happy to report that I have an employer now who advocates for me and there are things in place that support me and set me up for success. I still do worry when I take too much time off, but that is my own personal guilt, not guilt from my organization, which makes a world of difference. No employee should have to stress or become filled with anxiety when it comes to calling out sick, or having to ask for alternative work assignments because of their health. It not only dampens morale, but it inhibits productivity. Accommodating employees makes them feel more confident and they want to contribute and be productive and be members of the organization. Employers, look at your policies, be flexible, work with your employees, do what you can to accommodate them. After all, they are what makes your organization go round.

Jae Cobb
Jae Cobb @jaecobb
contributor

How Ableist Workplace Policies Harm Employees With Chronic Illnesses

People automatically assume that because you are working, you are very healthy and there are no challenges in your life. That is not always the case or situation. Many of us who are chronically ill are still trying to work, in many cases full time, because we don’t have a choice. We need the income and the insurance. However, there are many employers who are not very accommodating to employees who have chronic illnesses. Sure, there are protections in place such as FMLA and ADA accommodations, but those aren’t always easy to enact or you aren’t always eligible for them based on your tenure with the company. And if you don’t have protections in place, there may be an unfair process in place to take time off for appointments, sick days, or even just for operations in general. I have experienced this at a previous place of employment and needless to say, things did not end well at all. When I first took the job, I really hoped that my chronic illnesses would take a vacation, I wouldn’t have any issues, and would be able to accrue leave and do well. But I soon realized that I was not in a positive work environment and that quickly contributed to the flare-up of many of my conditions. I also had to fight many a day to get time off for doctor’s appointments and was questioned without end about why I needed time off for an hour or so for my appointments. And then the unthinkable happened. I had been sick for several days, and nonetheless showed up to work because my employer made it seem like I would have lost my job had I called out. The building I was working in was very old, had known mold and other environmental issues, and despite my complaints about how they affected my health issues, nothing was done. There also was a contractor who worked in the building who had a communicable disease and was around employees and when concerns were voiced from multiple employees, they still did not remove this person, and he continued to work multiple shifts daily, which was a concern to me because of my weak immune system. But because I was new, I couldn’t evoke ADA accommodations or FMLA, so I had to deal with the consequences. Eventually, I got so sick that one night, my heart started racing and I couldn’t stop coughing and I ended up having to call 911 to my home. I was rushed to the hospital and was admitted immediately. I spent a week in the hospital and when I called my employer to tell them I had been admitted the first day they showed concern and the second day they called me to ask “when I was coming back to work?” My mother, who never left my side the entire week, was furious. Here I was, on oxygen and heart monitors, struggling to breathe and survive and all they cared about was when I was coming back to work! I eventually was discharged from the hospital and put on bed rest for another week. When I made it back to work, things were not the same. Any time I wanted off for an appointment, my two weeks off were brought up and I had to write an appeal to the department head for time off. This happened for the next six months. My health continued to decline as well. But my performance never faltered even though I had to take time off for my medical appointments, I would like to point out, even though my employer attempted to make that an issue. Finally, one day, exactly one day before my one-year anniversary, I was terminated. My employer claimed it was because I wasn’t a fit for the job, but I knew it was because of my health issues. Now legally, I knew they couldn’t say that and they knew if they said that they could get sued, but because I live in an “at will” state, they can give any reason to let someone go. For an entire year, I was consistently reminded that I was out from work for two weeks and in the hospital and there was not any understanding. I was always afraid to take time off for fear of termination. My work environment was not made for someone with chronic illnesses. And the sad part is, this is all too common. Many of us have to lie about our conditions, or push through pain and symptoms to keep our jobs, or push off care because of our employers’ policies. Yes, there are federal laws in place to protect us, but employers find loopholes and ways to not abide by them and it makes it hard for those with invisible illnesses and disabilities. I am happy to report that I have an employer now who advocates for me and there are things in place that support me and set me up for success. I still do worry when I take too much time off, but that is my own personal guilt, not guilt from my organization, which makes a world of difference. No employee should have to stress or become filled with anxiety when it comes to calling out sick, or having to ask for alternative work assignments because of their health. It not only dampens morale, but it inhibits productivity. Accommodating employees makes them feel more confident and they want to contribute and be productive and be members of the organization. Employers, look at your policies, be flexible, work with your employees, do what you can to accommodate them. After all, they are what makes your organization go round.